RARE-X, the collaborative platform for global data sharing and analysis to accelerate treatment for rare diseases, named rare disease advocate and bioinformatics executive Charlene Son Rigby as its new CEO.
The appointment comes weeks after the nonprofit, which is dedicated to enabling patient communities to collect and manage de-identified patient data securely easily, launched the first set of data collection programs across 11 rare diseases. It signals a new phase of growth for the organization as it works to scale its operations. Charlene will be charged with overseeing the strategic growth of the technology nonprofit and manage its day-to-day operations.
RARE-X founder Nicole Boice will remain on the RARE-X board and serve as chief engagement officer, where she will be responsible for driving partnerships with industry, researchers, and patient organizations and focusing on development.
“The thought leadership that RARE-X can bring around patients owning their own data is important given how fragmented and disjointed the patient data repositories space is. Charlene can carry that vision, and there’s very little doubt about that,” said Walt Kowtoniuk, venture partner with Third Rock Ventures and chairman of the board for RARE-X. “She backs that up with incredible credibility, as a rare disease parent, and also with a tremendous background and experience set.”
Charlene said that, like many other parents of children with rare conditions searching for treatments and cures, she has discussed with researchers the critical role patient data can play in leading to needed advances. She said she had been impressed with the structure and rigor RARE-X has brought to the process and thinks it will play a critical role in accelerating the diagnosis and treatment of these diseases.
“We need platform technologies to address the broad and growing number of rare diseases that we have,” she said. “These platform technologies and approaches are going to be critical for us to develop therapies for all of these patients with unmet needs.”
Charlene brings to RARE-X both her professional experiences as an executive with entrepreneurial bioinformatics companies and her personal experiences as a rare disease patient advocate. She recently served as chief business officer of Fabric Genomics, a developer of an AI-based platform for the analysis and interpretation of next-generation sequencing. There Charlene oversaw the firm’s global commercial organization. Before that, she held executive roles at enterprise software and genomics companies, including Oracle and Doubletwist. She started her career in neuroscience research at Roche.
Charlene also serves as president and founding board member of the STXBP1 Foundation; a patient advocacy organization focused on rare neurodevelopmental disorders caused by mutations to the STXBP1 gene. She has an eight-year-old daughter with the condition.
“RARE-X has been looking to expand its senior leadership team. We went through a rigorous search to identify that next leader, and we found Charlene, who is experienced in the tech sector, in the genomics sector, in startups, and as a patient advocate. She brings a great skill-set to lead the organization,” said RARE-X’s Boice. “We’re showing the impact of what we’re doing in a small way. Now we’re looking to scale and bring on the right leadership to create the rest of the infrastructure that we will need to support the global ecosystem.”
Charlene holds a B.A. in Human Biology from Stanford University and an M.B.A. from the Haas School of Business at U.C. Berkeley. When she entered college, her father told her that the only two majors she could pursue were chemical engineering and pre-med. At Stanford, Charlene developed a love for neuropsychology and neurobiology, becoming a human biology major. However, after shadowing a friend who was a surgeon, she realized medicine wasn’t her calling.
After college, she began work in the pharmaceutical industry and soon became involved in startups in genomics and bioinformatics. Her interest in entrepreneurship and startups led her to business school.
She’s hopeful about the potential RARE-X has to change how data is collected, managed, and shared in the rare disease landscape.
“We’re at an exciting point. The pharma industry is realizing that natural history data is not something that should be put into an ivory tower and that information should be considered pre-competitive,” she said. “Where they are going to be able to excel and bring their IP is going to be on the therapy development side, and I’m hopeful that trend will continue to solidify.”